Monday, August 22, 2011

Odds and Ends

There was a bit on the Today show this morning about toxic friends. The statistic that they gave on the show was that 84% of women have at least 1 friend who makes life difficult. I can buy that. They said that the friendship that is causing you stress can have a negative impact on your health and well being. They broke these "toxic friends" into several categories - The Narcissist, The Chronic Downer, The Critic, The Underminer, and The Flake. I think we can all say that we've at least known, if not been friends with, a person who fits into at least one of these categories, and its hard to be friends with them. So I'm breaking up. I am walking away from these toxic friendships. I pick my friends because they are people that I enjoy, that make me feel good about myself. When I hang out with my friends, I want to leave feeling happy and satisfied, not come home and bitch about them and why they make me crazy. I've got bigger things in my life to worry about than The Underminer, The Critic and The Narcissist.

This brings me to odds and ends #2. Let me first say that I, too, am guilty of this, and I'd like to change it about myself. It makes me nuts when people pass judgement on the way other people parent. I know we all think we're doing it the right way. But whose business is it to say how much time you should or shouldn't be spending with your kids and how much TV they should or shouldn't watch and where you should or shouldn't send them to school. If spending every minute of every day with my children is what makes me happy, then that's what I'm gonna do. They grow up so fast and I don't wanna miss a thing. This was a big thing for me when we had the twins and Drew was in the hospital, and its come up again lately since I started volunteering at Children's. Its so easy for people to tell you what you're supposed to do - that you need to spend more time with your husband or get out of the house a little more often or whatever. And what I've shared with the folks in the NICU that I talk to is this - its you life, live it as you see fit. For some people, spending time with their significant other is the most important thing in the world to them. For other, myself included, its tucking my kids in at night with a hug and a kiss and a promise of a good day tomorrow. We almost never go out before the kids go to bed. Its what's important to us. If you choose differently, that's fine, but your decision is no better than mine.

I just needed to rant for a few minutes, now I'll get into the CF news I've got. First things first, I've got a meeting this Friday with our local Congresswoman to ask her to participate in the Congressional CF Caucus and to support funding for the FDA and the NIH in FY 2012 to keep the programs that are so vital to people living with Cystic Fibrosis. And the even better news is that the totally awesome Dr. Lisa Burns will be coming with me! I'm not exactly what I'd call savvy when it comes to matters of government. I know what I know and what I believe in and support, but that's about the breadth of my knowledge. What I think really needs to happen at this meeting is simply for Congresswoman Schmidt to hear our story and understand that Cincinnati Childrens Hospital, within her congressional district, is one of the top CF research facilities in the country, and that's what her support of our cause is crucial as we head into some big things in the coming years. I'll let you know how that goes after the meeting.

In other big news, Dr. Burns told me that a doctor named Colby Wyatt, who just so happened to be a resident in the NICU when Drew was in there and took care of Drew for about a month when he was first born, decided to do his fellowship in Pulmonary. Dr. Burns and some other encouraged Dr. Wyatt to submit Drew's case for the North American CF Conference as the Fellow's Presentation and it was accepted!! Drew is going to be the case study discussed at the conference in November! Its the largest meeting of CF doctors and caregivers in the country and they're all going to be talking about Drew! I think that's incredible and I really, really want to go. Its in Anaheim, CA November 3-5. I made a few calls today and it looks like with the approval of the director of your CF Clinic, patients and parents can attend. Its directed toward medical professionals, but I don't really care. Knowledge is power, baby. I'm sure I'd have no problem getting the director of our clinic to sign off on that, as Dr. Burns suggested that I would probably really enjoy it and I know she'd support me if I needed her so. There is a registration fee that isn't totally unreasonable, but then there is airfare and hotel and a rental car and the cost just seems to add up and might just be more than we can afford right now. We're going to talk about it this weekend and see if we can make it work. In the meantime, if anyone reading this cares to sponsor me, i'm open to it :)

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"65 Roses"is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce.

This blog, 66 Roses, is dedicated to finding the cure.

Cystic fibrosis is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). Thick mucus clogs the lungs and leads to life threatening infection. The pancreas is also obstructed by this thick mucus production, imparing digestion and leading to malnutrition. - www.cff.org